Do health charities lobby on behalf of drug companies?

Whether a drug is available on the National Health Service (NHS) here in the UK is essentially decided by an organisation known as the National Institute for Health and Clinical Excellence (NICE). NICE makes its decisions on drugs based on the cost per ‘quality adjusted life year‘ (QALY). A year in perfect health is 1 QALY. A year with some chronic illness of disability will be something less than 1 QALY.

Yesterday, based on its normal calculations, NICE took the decision for a prostate cancer drug to be banned from provision by the NHS. Basically, the drug does not provide good value for money. This morning, a piece appears in the paper The Independent which highlights the fact that as is often the case, a charity is rails against NICE’s decision. The author of the piece, Jeremy Laurence, specifically mentions objections raised by the Prostate Cancer Charity regarding yesterday’s decision. He also cites objections raised by the charity Beating Bowel Cancer regarding a similar situation with a bowel cancer drug.

Jeremy Laurance makes the point that not all treatments can be made available to all patients irrespective of cost. And he also asks why the ire of charities always seems to be directed at NICE, and not the drug companies. After all, we know that pharmaceutical drugs have a generally spectacular mark-up, and there might be some room for some reduction in price while still preserving a healthy profit for the drug companies.

Jeremy Laurance asks if we should know if there is some conflict of interest within patients groups and charities, in the form of pharmaceutical funding. Back in 2008, Jeremy’s own publication conducted an investigation into such matters which it reported here. This article claims that Beating Bowel Cancer received 10 per cent of its income from drug companies.

I personally have looked into the funding of health charities before. My overwhelming experience is that it’s generally hard to find information about this and true transparency. This morning, I went looking for information about the funding of the Prostate Cancer Charity. I found this document which outlines the charity’s policy regarding funding from pharmaceutical companies. It was published in July 2008, and states is due for revision in July 2010, but it does not appear to have been reviewed.

Here’s a quote from the opening page of the document:

Whilst we acknowledge that support from pharmaceutical companies is an important resource, we recognise that partnerships with these companies should be approached with caution. The Prostate Cancer Charity seeks to make clear that it will not permit any company with a direct commercial interest in prostate cancer to influence its activities.

Would it be unduly cynical for some of us to have a ‘they would say that’ attitude to this statement? Here’s another quote, this one from the 2008 piece in the Independent. It comes from Tim Kendall, director of research at the Royal College of Psychiatrists:

Drug companies will try to do anything to align their interest with those of patients. They do things at every level of the health service and we know they do it with patient groups.

It is a multi-pronged approach to persuade patients that their drug is the one.

9 Responses to Do health charities lobby on behalf of drug companies?

  1. jgkarob 3 February 2012 at 4:12 pm #

    Sorry, Dr B, I have to disagree with you – a first for me.
    These same accusations are levelled at the MS Society. The same NICE conclusion was made for the first-line MS drugs (Copaxone, Betaferon, Avonex and Rebif) and that decision was overridden in 2002 by Tony Blair after a long-fought campaign.
    The drugs don’t work for all types of MS. The truth is, that NO drugs work for all types of MS. The patients that respond well, are those with non-progressive relapsing remitting MS. At diagnosis, there is now way to tell if the MS diagnosis is of a progressive type or not.

    Jeremy Laurance wrote a very biased article in 2010 (The MS drugs don’t work and the NHS is paying for them). He was wrong, many people have a far better quality of life due to these drugs.
    I’m one of them.
    The logic is simple. When I have a relapse, I’m ill. I may be ill with severe neurological symptoms for several weeks – or as long as a year.
    When I’m not relapsing, I’m not ill. Life is the same as for any other person, with the same chronic problems, such as osteoarthritis, metabolic disorder – but these conditions aren’t part of the Multiple Sclerosis.
    For more severe types of MS, there are now two drugs that have been proven to slow/stop progression AND relapses. These drugs aren’t without risk, but for people who are being constantly hit by relapses and progression, they are willing to accept this risk.
    The Everyday Living board at the MSS is a great resource of experience and support for all the MS drugs. There are no drug reps posting there – it’s a community.
    This doesn’t prevent people who aren’t on a drug from occasionally making accusations that the main message is being manipulated by drug reps.
    Without campaigning for access to the drugs, people with MS would be residents in the country with the worst MS drug prescribing rate in the world – instead, the UK has the second lowest prescribing rate.
    Jeremy Laurance and The Independent ignored all protests after his MS article. It was flawed in so many ways. The newspaper didn’t print any of the letters of protest and no one was offered the chance to put their point – that the MS drugs do work and that whilst they don’t work well – for some they do. That’s the nature of statistics.
    I’m still walking thanks to Rebif and lucky that my type of MS wasn’t a progressive type.
    I’d rather be well than constantly ill. That’s what it comes down to.
    As for the pharmaceutical companies, maybe the NHS could/should employ better negotiators – hardline people who know what other countries in the EU pay for their drugs?

  2. Dr John Briffa 3 February 2012 at 4:30 pm #

    jgkarob

    I don’t know about the situation with MS drugs. But even if there is an argument for the use of these drugs, that does not necessarily negate the blog post, does it? The plain fact of the matter is that many patient groups and charities have conflicts of interest that are, often, not obvious.

    Also, you say

    I’m still walking thanks to Rebif

    Even if the drug produces statistically significant benefit, there is no way of telling for sure that it worked for you (or any individual person, for that matter). I’m not saying it didn’t work for you. It’s just we can’t know one way or the other.

  3. Feona 3 February 2012 at 8:04 pm #

    Do health charities lobby on behalf of drug companies? Is the Pope a Catholic???

  4. AJ 3 February 2012 at 8:26 pm #

    ‘Drug companies will try to do anything to align their interest with those of patients. They do things at every level of the health service and we know they do it with patient groups. It is a multi-pronged approach to persuade patients that their drug is the one.’

    Well, of course the drug companies do that; it’s their job. It’s not that they’re being commercial about patient welfare: they’re being commercial about commerce.

    Charities are bound to respond to demands from their members that they agitate for a certain drug to receive funding; that is their job, even if some of the demand is whipped up by drug company astroturfing and similar.

    I agree that, when NICE turn a drug down, the relevant charity ought to be blasting away as hard at the pharmaceutical company as at NICE. At the very least, this might strengthen NICE’s hand in the horse-trading over cost to the NHS that always follows a decision not to fund. I would share your concern if charities were not doing this for fear of offending their big benefactors.

    I have MS, and I remember the situation back in the early 2000s when MS charities and drug companies in the UK were campaigning to make available the drugs that are now the first line treatment for relapsing-remitting MS. I am glad that the campaign succeeded; I ended up being on one of those drugs for ten years. I did pretty well on it, and I am glad that I was on the best medication available to improve my chances. I am well aware that I benefited from the success of a lobby group in securing political interference to overturn NICE’s decisions. But hey, that’s politics, and that’s life. I knew perfectly well that the drug companies’ rather fulsome and saccharin-flavoured lobbying on my (and other patients’) behalf was not entirely for my benefit! Yes, transparency in the running and financing of health charities is important. But when the interests of a particular group of sick people (and, therefore, the charity that represents them) happen to coincide with the commercial interests of drug companies, no amount of charity funding regulation is going to prevent that coincidence of interests expressing itself.

    I am not too worried about NICE, though. They are big boys and girls, and I am sure that they can weather the storms of campaigns from drug manufacturers, patient groups and others, although I doubt whether they could survive sustained (rather than just occasional) lack of political support. They did not take on their necessary role of providing an objective framework for making funding decisions in order to be popular. I think we have done well in the UK to develop the NICE process for having grown-up conversations about costs and benefits. Such rational debate is still a million miles away in countries like the USA, and they need it even more than we do.

  5. Morwenna Given 4 February 2012 at 12:22 am #

    As part of my dissertation some years ago I looked at the publicly available documents such as financial reporting between the drug companies, so called medical charities, etc. It was obvious that there were substantial and incestuous links with virtually no accountability and certainly no clarity, not only at the donation level but also at the board level. I was left with the conclusion that a donation to a medical charity was a donation to a vested interest and ultimately the bottom line of Big Pharma. It had nothing to do for the benefit to the patient.

    Prostate cancer sufferers would do far better to go to a Medical Herbalist to resolve their condition and in some cases the plants used have been shown to be better than certain drugs. NICE made the right decision and often it is forgotten that many of these drugs have huge side effects which drive up healthcare costs and the patient suffers terribly. In addition extending life by 2 months in a drug induced stupor to offset the damage and pain is not spiritually or financially or practically of benefit to anyone except Big Pharma.

  6. jgkarob 4 February 2012 at 12:48 am #

    Dear Dr Briffa,
    When I wrote ‘I’m walking thanks to Rebif’ it wasn’t as a sort of magic wand cure. I was constantly ill with relapse after relapse. The relapses were making me so ill that I could only shuffle around, doubly incontinent and unable to concentrate for more than a few minutes.
    It took months to work, but after four months the constant relapses stopped and the next one wasn’t until three years later.
    After that one, I got serious about my health and experimented with diet, before coming to realise that gluten was making my day-to-day pain levels and muscle problems (spasticity) much worse. I discovered your blog not long after.
    What really upset me about Jeremy Laurance’s article for The Independent, was that it was one-sided.
    Being constantly ill is awful – but being hit by intense neurological attack after another is worse. I’d probably still be shuffling around without Rebif, but it gave my body the chance to heal and regain strength.
    It’s the injustice of the denial of treatment that fills people like me with fear. I was lucky – I arrived back in the UK after years abroad at the right time in order to gain access to the drug that had held back the MS relapses.
    I recently learned from the local Galician/Asturian nurse who administers Rebif, that people here have been on the drug since 1996. Two years before licensing – but she still has patients who are in the RRMS phase and who have not progressed to Secondary Progressive MS.
    Jeremy Laurance didn’t do enough research to write his one-sided article on MS.
    Is it possible that he’s done this again?
    There is no evidence in the UK that drug reps infiltrate message boards.
    I hate to disagree with you. You are the one blogger that I can rely on to tell people that they don’t have to believe in the lowfat/cholesterol myths and I have always trusted your dietary advice.
    Apologies,
    K Roberts

  7. Kayell 6 February 2012 at 5:49 pm #

    I keep seeing statements very similar to your “After all, we know that pharmaceutical drugs have a generally spectacular mark-up” so I decided to go and actually look for a change rather than just accept it. It was very interesting.

    A key measure of the actual profit a company makes is Return on Capital (basically how much profit they make as a proportion of how much they had to spend to make it). So how do pharmaceuticals do? Here are the Return on Capital figures for Industrial sectors from the most recent FT All Share Index (sourced from Bloomberg on 5/2/12): Personal Goods 26.67%, Aerospace & Defence 25.38%, Software & PC Services 23.81%, Mining 23.71%, Electricity 22.84%, Pharmaceuticals 22.14%, Telecoms 21.89%, Household Goods & Construction 21.01%, Chemicals 19.52%, Tobacco 18.70%, Food Producers 17.20%, Drinks 15.33%, Oil 14.87%, Gas & Water 12.09%, Mobile Telephones 5.77%.

    Hmm. Not even close to the top.

    I think people tend to forget the spectacular outlay that pharmaceutical R&D requires. Given that less than 1% of possibilities actually come to market and the costs of the failed drugs’ research has to be covered, clinical trials can cost 100′s of millions of pounds, patents are not endless and profits have to be made to keep the shareholders happy and the company actually in business, I really can’t see how else pharmaceutical companies can continue to research and launch new drugs without charging a “spectacular mark-up” on the ones that actually get approved.

    For what it’s worth, of course reputable charities lobby government agencies to get drugs approved and more accessible for their members. It’s part of their job. Relating this to donations from drug companies is equivalent to the “wearing shorts causes skin cancer” adage – the underlying cause of both (the sun / a shared userbase) has been completely ignored (never mind the tax, PR & marketing advantages of donations). I can’t say the same of disreputable charities of course. I’d happily believe that some of them are complete fraudsters and only exist to get hand outs.

    Finally, and not really directly applicable to your blog, but picking up on some of the other comments: Jeremy Laurence’s article on the risk-sharing scheme for MS disease modifying drugs was, frankly, terrible. He clearly had not understood the research or the scheme, but despite this made some very public, sweeping statements that undermined the cause of people with MS to get access to the only drugs that could lessen the severity of their life-long, progressive disease. Fame is not more important than truth.

  8. DB 7 February 2012 at 12:46 pm #

    Dr Briffa, thoroughly enjoyed your podcast with Jimmy the other day and ended up buying both your book and the art and science of low carb living which you plugged nicely too.

    You came across very well and I can tell you are a great doctor. Wish there were more like you! I have just started low carb and it’s truly amazing. My hunger has just dissapearred and I have never felt like this before in my life. I have never skipped meals, I have never just decided IM full and put the meal down. Such a strange feeling. The weight is coming off fast at present too.

  9. Sarah Blackburn 7 February 2012 at 3:09 pm #

    I’d like to comment on the assumption you quote: “Jeremy Laurance makes the point that not all treatments can be made available to all patients irrespective of cost.” That is true in that given infinite resources people can go on expending more on improving health, well-being or whatever. But Laurance’s assumption is therefore that it is the new, expensive treatments which we should not fund publicly despite the benefit that individuals can gain from them. NICE also takes into account the number of people likely to want/need a treatment – and that counts against the recent prostate drug because it is such a common cancer. I’d like to suggest that this is unfair as it affects most the people who have severe disease. Meanwhile we fund publicly a lot of stuff that we could most of us either pay for directly as we wanted it or do without.
    I’d better declare an interest. I thought this way before I had breast cancer and lymphoedema – fortunately both under control now – and found out how it feels to be really ill and how much it costs to provide treatment (I looked up costs of drugs in case I was going to be denied anything on the NHS and needed to raise the money – I do not have trusting nature!).
    What our invaluable NHS has done to our national culture is to encourage us to think that we have a RIGHT to totally free care. So women will pay £40 for a haircut and blowdry but not for a lymphatic massage. A free-prescription card is given to all cancer sufferers regardless of what we can afford (and to all in Scotland). While I agree this may remove the stigma of means testing and could be cheaper to administer, we also have free access to GPs – who in consquence are flooded with worried well and now resort to use of nurses to cope with too many people, too many demands on their time.
    I think we should pay for our basic medical care as we do for our eye care and our dental care – with help for the least well off. But as taxpayers and citizens we should fund the most expensive care be that high tech for MS and cancer sufferers, people with rare diseases, and long term conditions. After all, what starts as a rare treatment can actually become much cheaper and widely available over time. Healthcare should also perhaps be funded by visible contributions for those of us who are better off, hypothecated and ring-fenced for health if via taxation or otherwise via insurance – which can’t run out on us because the state will be the risk taker of last resort, for the very big stuff.
    One benefit we might gain (see your post on the doctors striking) is that we would take better care of ourselves so we don’t need to go the GP so much; don’t need the comfort of going away from the surgery with a prescription; don’t suffer the iatrogenic illnesses from those prescriptions. After all, it only took a charge of a few pounds to keep the M6 clear of traffic. Perhaps the charge for visiting the GP should be pegged to the price of a pack of 20 cigarettes.

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